The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Followers

Friday, October 3, 2014

Conclusion

Cytokines patterns supported both Th1 and Th2 cytokine profiles in CFS and MS. Similarities in the cytokine profiles of MS and CFS, combined with the already acknowledged similarities in immune cell function and symptoms, suggests a neuroimmune pathology for CFS with parallels to that of MS.

* * *

Why, when my disability comes up in conversation with someone new, I start with the comment "I have something very similar to MS" -- they really are very similar and MS is something they can get their heads around. Many times, the conversation ends there.

If they ask for more information, level 2 is "a neurological disease combined with poor immune function." Again, many times this is all the information necessary.

If they continue to probe, "CFS, which is known in the rest of the world as Myalgic Encephalomyelitis", and a brief explanation of WHY the US insists on calling it CFS.

Thursday, October 2, 2014

Hi, my name is Deborah Brooks. I also suffer from chronic fatigue syndrome. I am currently completing a Master of Clinical Psychology degree at Cairnmillar Institute in Australia, and my supervisor for this research project is Dr Alistair Anderson. We are seeking participants to complete a survey for a research project. The research involves answering some questions about your experience of Chronic Fatigue Syndrome, the way you think about it and the types of support you have around you. The research should take about 30 minutes of your time. Your contribution would be greatly appreciated. To receive more information please click the link, otherwise feel free to ignore this invitation. Thank you for your participation.Deborah Brooks BA (Hons) and Dr Alistair Anderson PhD MBA GradDip AppSc https://www.research.net/s/6MRTP3Q

The Jury, by John MorganThe Agency for Healthcare Quality and Research (AHRQ) has released itsdraft report on the Diagnosis and Treatment of MyalgicEncephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

For those who find it hard to keep track of the plethora of reports,committees, panels, and reviews currently underway, the AHRQ reportprovides the basis for the Pathways to Prevention, or P2P Workshop.The P2P Workshop has been convened by the NIH for the purpose ofmaking a report that will be used to evaluate research grants forME/CFS, and upon which pharmaceutical companies will base theirclinical trials.

The P2P panel is composed entirely of non-experts. The preference fornon-experts was intended, according to Susan Maier, ExecutiveSecretary for the NIH Advisory Committee on Research on Women'sHealth, to act like a "jury," by which she meant the composition ofthe panel was meant to be unbiased.

Leaving aside for a moment the absurdity of consigning a research case definition for a disease to people who aren't even physicians, thejury system itself does not work. Trial by jury is one of the mostinefficient systems of justice in the world. Swayed by bombasticarguments, prejudice, and crocodile tears, juries of twelve unbiasedpeers routinely find innocent people guilty, and allow the guilty togo free. As a method for determining who gets grants for medicalresearch, anything even remotely resembling the jury system isentirely inappropriate.

I have touched upon some of the short-comings of the draft reportbelow. I've tried to keep it brief. (There is so much wrong with thisreport that if I were to write a thorough critique, it would be longerthan the report itself.)

You can read the AHRQ draft report and appendices here<http://www.effectivehealthcare.ahrq.gov/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=586&productID=1976>.

You can make comments (until October 20) here<http://www.effectivehealthcare.ahrq.gov/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=586&productID=1976>

You can read more about the P2P in these posts:

Advocates to NIH - "Pull the P2P!"<http://cfstreatment.blogspot.com/2014/06/advocates-to-nih-pull-p2p.html>All the reasons why the P2P is dangerous

Protocol for Disaster?<http://cfstreatment.blogspot.com/2014/05/protocol-for-disaster.html>Jennie Spotila explains why the AHRQ report is a recipe for disaster,and how they pulled a "bait and switch" by changing their KeyQuestions.

P2P: The Question They Will Not Ask<http://cfstreatment.blogspot.com/2014/07/p2p-question-they-will-not-ask.html>Mary Dimmock and Jennie Spotila explain how refusing to consider howCFS and ME differ will affect the results of the P2P Workshop.

Note: Anyone who wishes to reprint this blog post may do so. (Rememberto link back to the original and provide attribution.)_______________________

A BRIEF CRITIQUE OF THE AHRQ DRAFT REPORT

By Erica Verrillo

Point 1: The draft report shows limited understanding of the illness

The report begins with the erroneous statement that "The term ME wasfirst used in the 1930s after an outbreak of neuromyesthenia ..."

A quick google search would have revealed that "myalgicencephalomyelitis" was first used in a letter to the editor entitled,"A New Clinical Entity?" published in the Lancet in 1956. The authors– Emile Nihoul, Lise Quersin-Thiry, S.Chalmers Parry and Robert A.Good – were referring to what became known as Royal Free Disease, anoutbreak that occurred in London's Royal Free Hospital in the 1950s.Obviously, none of the members of the panel felt inclined to checktheir facts.

The report goes on to say that "Uncertainty persists regarding theetiology and whether the condition reflects a single pathologicallydiscrete syndrome, subsets of the same illness, or a nonspecificcondition shared by other disease entities." This statement reflects athorough misunderstanding of how the illness is perceived by peoplewho investigate and treat it. There are no experts in ME/CFS who would claim that it is a "nonspecific condition shared by other disease entities." There are, however, numerous researchers who author paperson "chronic fatigue" and "fatiguing illnesses" such as cancer and MS.The authors of the AHRQ draft report, unlike experts in the field, do not have enough background to be able to distinguish between "chronicfatigue" and ME/CFS.

While the introduction to the report is not crucial, it does indicatethat the people writing it not only had no knowledge of the illness,but that they did not want to spend any time acquiring it. The willful ignorance that is demonstrated in the introduction permeates the entire report.

Point 2: Problematic Search Methods

In order to find abstracts and articles, the AHRQ searched three maindatabases using the terms: fatigue; Fatigue Syndrome, Chronic; andEncephalomyelitis. With the notable exception of PsycINFO, a databaseof abstracts of literature in the field of psychology produced by theAmerican Psychological Association, these are the same databases usedby the Drug Class Review: Drugs for Fibromyalgia: Final OriginalReport <http://healthandwelfare.idaho.gov/Portals/0/Medical/MedicaidCHIP/FibromyalgiaFinalExecutiveSummary.pdf>published by the Oregon Health & Science University in 2011. Ovid andEBM/Cochrane are large medical databases, though they don'tnecessarily include every study conducted on a given illness orcondition. Only controlled trials are included in the Cochrane<http://www.cochrane.org/cochrane-reviews> databases.

The most glaring problem with the search is that it included studieson "fatigue." Indeed, a number of studies included in the review wereon "fatiguing illnesses" rather than ME/CFS. Like the introduction,the search reflects a state of confusion on the part of the authors.The confusion is not altogether surprising, given that researchersalso appear to be confused about the difference between CFS andchronic fatigue. Nonetheless, experts in the field are not confused.They are aware that while ME has been used abroad since the 1950s, ithas not been used as a diagnosis here in U.S. Specialists have beenlimited to CFS as a diagnosis, like it or not.

A second problem is that with the perennial lack of NIH funding forME/CFS controlled trials, much of the information about treating thedisease is based on clinical observations. None of these wereincluded. nor were studies that were controlled, but which did notmeet the set of criteria for inclusion in the review – such asaddressing the Key Questions.

Point 3: Studies used for the report are inadequate to address the Key Questions

The studies that the reviewers included were not only too few, theywere completely inadequate to properly address the Key Questions.

The Key Questions to be addressed by the report are as follows:

1. What methods are available to clinicians to diagnose ME/CFS and howdo the use of these methods vary by patient subgroups?

a) What are widely accepted diagnostic methods and what conditions arerequired to be ruled out or excluded before assigning a diagnosis ofME/CFS?

b) What is the accuracy and concordance of diagnostic methods?

c) What harms are associated with diagnosing ME/CFS?

2. What are the (a) benefits and (b) harms of therapeuticinterventions for patients with ME/CFS and how do they vary by patientsubgroups?

a) What are the characteristics of responders and non-responders tointerventions?

There are problems with the wording of some of these questions. Forexample, in a country in which 80% of the physicians don't believethat CFS is a real disease, what could "widely accepted" be referringto? And, "What harms are associated with diagnosing ME/CFS?" seems tohave an a priori assumption that diagnosing the disease may in itselfcause harm. But aside from the oddness of the wording, the studiesthey chose do not adequately address the questions.

The criteria for exclusion from the review included, among others,that the study did not last not long enough (therapeutic trial of lessthan 12 weeks), was published before 1988, had wrong study design, ordid not address a Key Question. (There were 8 more exclusions.)

From among the thousands of studies that have been conducted, thecriteria limited the review to a scant 64 studies. Some of thelandmark studies that were excluded were all of the studiesdemonstrating immune dysfunction (e.g. NK cell deficiency studies byBrenu et al.), studies of viral reactivation and antiviral treatments(e.g. all Lerner and Jessop studies, Kerr parvovirus B19 study),studies documenting brain abnormalities (e.g. Lange's MRI study), andall of the papers published by Tom Kindlon on harms associated withGET and CBT. Not even appearing on the excluded list were theground-breaking 2-day CPET studies conducted by Keller, Stevens andSnell, Peckerman's cardiac insufficiency studies, and the recentWatanabe study on CNS inflammation.

The fact that some of the most significant studies in the ME/CFSliterature did not even appear on the excluded list was mind-boggling.Of the studies that appeared on the exclusion list, the reasons givenwere various, but among the most frequently cited were that thestudies did not address the Key Questions. Yet, several studies thatdirectly addressed the Key Questions were omitted (for example, 2-DayCPET studies were not even considered), while studies that did notdirectly address the Key Questions were included. This arbitrarinesspermeated the entire study selection process.

(Going though the studies that were accepted I found three that didnot meet the criteria for inclusion without reading further than thefirst page. I also found studies in the excluded section that met thecriteria. Having no experience with ME/CFS, the panel lacked theability to distinguish relevant from irrelevant studies.)

Point #4: Contradictory and unsupported conclusions

In terms of treatment, the report was heavily weighted towardpsychological studies. Out of the 36 studies used to address KeyQuestion 2, 14 concerned CBT. Considering that the PACE trial wasincluded, but not any of its critiques, it is not surprising that thereport favored CBT:

Yet, after a detailed examination of the actual results of the trials,the report went on to conclude that:

"In summary, head-to-head trials had mixed results with two trialsfinding improvement with GET, two trials finding improvement with CBT,and one trial finding no differences between CBT, GET, and usual care.In considering non-head-to-head trial data, there is low strengthevidence that CBT and GET provide similar improvement in measures offatigue and/or functioning."

Those reading this report will base their recommendations on the firststatement, as the second statement requires wading through a lot ofstatistics. They won't even realize that the conclusion that CBTprovides "improvement in fatigue, function, quality, and employment"is ultimately derived from the results of a single, deeplymanipulated, study. (The PACE trial.)

In terms of Key Question 1, the report suffered from similarinconsistencies, For example, the report concludes with the statementthat "the negative effects of being given a diagnosis of ME/CFS appearto be ... universal."

I could not find a single study from among the list of includedstudies that would support the conclusion that the diagnosis of ME/CFShad negative effects universally.

In the Asbring and Narvanen study<http://www.ncbi.nlm.nih.gov/pubmed/11837367> entitled "Women'sexperiences of stigma in relation to chronic fatigue syndrome andfibromyalgia," the authors concluded that " The women experiencedstigmatization primarily before receiving a diagnosis." [Emphasismine] In addition, they stated that "Stigma consisted of questioningthe veracity, morality, and accuracy of patient symptom descriptionsand of psychologizing symptoms."

The Dickson et al. study<http://www.tandfonline.com/doi/abs/10.1080/14768320600976224#.VChMivmICm4>,"Stigma and the delegitimation experience: An interpretativephenomenological analysis of people living with chronic fatiguesyndrome," reported that "participants reported delay, negotiation anddebate over diagnosis: further, they perceived their GPs to besceptical, disrespectful and to be lacking in knowledge andinterpersonal skills." [Emphasis mine]

In the Green et al. study<http://informahealthcare.com/doi/abs/10.1300/J092v05n02_04?journalCode=wcfs>,"Stigma and Chronic Fatigue Syndrome," the authors state that "Mostsubjects (77%) were labeled as 'psychological cases' by one or more ofthe physicians (mean = 8) consulted, but of the 4 stigma measures,only disclosure was related to physician labeling." This means thatpatients only felt stigmatized by their physicians after theyattempted to educate them about ME/CFS.

There was nothing in these studies to support the claim that thediagnosis itself had negative effects. Rather, it was the delay indiagnosis, and subsequent debate on the part of family and physicians– as well as the delegitimation resulting from a trivializing name –that led to negative effects.

In sum

The conclusions reached in this review were the result of a poorlyframed set of key questions, a literature search that managed toexclude the most fundamental research studies, and a misinterpretationof the studies that were eventually deemed acceptable for inclusion.As a whole, this report is fundamentally, and irredeemably, flawed -even given its narrow search results.

These major short-comings are the inevitable result of appointing a group of people who have no expertise in ME/CFS to evaluate 26 years of research. ME/CFS is a disease that demands expertise. It cannot be evaluated be a panel of non-experts.- See more at: http://cfstreatment.blogspot.ie/2014/09/the-ahrq-draft-report-fundamentally-and.html#sthash.Gh65Hra9.dpuf